Two years on ...: Early study leave and... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Two years on ...

Lady4 profile image
6 Replies

Early study leave and School holidays have been a breath of fresh air and I have learn't a lot over the past two years from you guys, Re-Active and from "looking for answers".

Both my sons initial diagnosis's, first (Chronic Regional Pain Syndrome) following Paeds appt, second I found out in a back to front way about FND, as it was only mentioned on Drs letter (not ours - physio picked up on it), we were just given letters with a few typed paragraphs and website to refer to.

Considering all that he went through, "the boy did well" and I am super proud and 6th form awaits, with his chosen courses.

When I look back at my re-actions/actions, I think I actually enabled his brain, letting him stay off school etc, so this term I need to be stronger and do things differently.

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Lady4 profile image
Lady4
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6 Replies
210272 profile image
210272

Lady4 I think you've done a great job with your son and we're all doing the best we can with the light we can see by at the time. They need to tell people the diagnosis during the consultations rather than hide it in the notes and they need to give the 'rule in' signs used to make the diagnosis too. In the UK a woman *was* told the diagnosis (during a 3 minute conversation with a neurologist in a corridor) and then told to 'google it' when she asked for further information about this condition. That's equally unacceptable.

Wishing you and your son all the best for the rest of the Summer (if we can call it that, what with all the storms) and for his time in 6th form :)

Lady4 profile image
Lady4 in reply to 210272

Thanks, I thought I would spread a bit of hope.

Shimmyaway profile image
Shimmyaway in reply to Lady4

Glad to hear of the salutary results of your considerable efforts to get your son back from the clutches of FND.

Lady4 profile image
Lady4 in reply to Shimmyaway

Thanks Shimmyaway.

Poseypink profile image
Poseypink

I’m so happy to hear that your son has improved, Lady4 …you’ve done a great job with him…and we have all learned quite a bit from you and your tireless research! You’ve helped me too! so thank you!

Lady4 profile image
Lady4 in reply to Poseypink

Thanks. Your welcome, I'll still continue to help if I can. Only this morning I was reading an article sent via email from re-active (just got last bit to read). I found the last table good advice for medical professionals.

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